Trapped in a web of bureaucratic red tape, aging parents losing their fight to ensure their ailing son can live in his own home.

David Brock has Duchenne muscular dystrophy, an inherited disorder that has weakened his muscles to the point where he now requires a wheelchair and full-time care. His aging parents are fighting to get proper care for their son.

For more than two years, Joanne and John Brock have desperately tried to find a way to ensure their son, who has complex medical problems, will get the care he requires when they become too old to help him.

At almost every turn, the aging Newmarket couple has run into bureaucrat red tape and delays from local health officials that have left them frustrated, discouraged and very angry. Every proposal they have made has been rejected, thwarted or stalled in some manner.

“As far as I’m concerned, they just keep leading us on, but nothing ever gets done” Joanne says. “I figure they’re just waiting for David to die.”

David Brock has Duchenne muscular dystrophy, an inherited disorder that has weakened his muscles to the point where he now requires a wheelchair and full-time care. He can’t breathe without the help of a mechanical ventilator. He runs the risk of choking on his own saliva. He has severe heart, bowel and urinary problems.

At age 30, David is believed to be the second oldest person in Ontario with the disorder. Most people die in their early 20s.

David, who studied computers at Seneca College, lives in his own townhouse in Newmarket. To do that, he receives help from nurses provided by the local Community Care Access Centre and personal support workers that he pays from money provided by the provincial health ministry.

But he remains highly dependent on his parents, who often must rush over to his apartment to help in emergencies, to fill in when caregivers don’t show up or to organize the hiring and scheduling of nurses and support workers.

His parents, both now well into their 60s, are deeply worried about what will happen to David when they are no longer able to lend a helping hand. “We are already very tired and very stressed out,” his father says.

David’s case is not an isolated one. Across Ontario, hundreds of people with complex medical problems lack appropriate care. Too often, it is left to their parents or other relatives to provide basic care or to act as emergency fill-in when paid caregivers are sick or fail to show up for their shifts.

The real problem arises when the parents become too old or physically unable to assist. Who steps in? And whose job is it to ensure proper care? Excuses and finger-pointing are rampant, but no one seems willing to step up and act quickly.

Despite all its talk about pumping billions of extra dollars into home and community care, Queen’s Park has washed its hands of dealing with regional health problems. Local Health Integration Networks (LHINs) that oversee regional health planning complain about a shortage of money from the province.

At the same time, Community Care Access Centres, which arrange for support from local health-care professionals, grumble about being overworked and underfunded.

In the Brocks’ case, Newmarket-Aurora MPP Frank Klees blames the Central LHIN, which oversees health-care planning for most of York Region, for failing to act.

“There seems to be no hesitation to pay top dollar for office space and furniture and executive salaries,” Klees said at a recent news conference in the lobby at the Central LHIN near Buttonville airport. “But when it comes to prioritizing health-care dollars to meet the needs of the most vulnerable in our community, all of a sudden those dollars are scarce.”

Sadly, there is not a single community-based facility in York Region that can provide the level of care that David needs. The lack of such facilities was first raised in 2006, but nothing was done.

That means David would be forced to stay in the intensive care unit at Southlake Regional Health Centre in Newmarket if his parents were no longer able to help care for him. The daily cost of such as stay is $3,000 or nearly $1 million a year.

On their own, the Brocks approached the March of Dimes for help. The group submitted a proposal to the Central LHIN to provide complete management of David’s care needs in his current home for $68,000 a year, on top of the money already being spent on his care.

John Brock says the Central LHIN rejected the proposal, a claim denied by Kim Baker, chief executive officer of the LHIN. The March of Dimes’ proposal is one of several under review, she said Wednesday in an interview.

On Tuesday, after the Star contacted her staff about the Brocks’ situation, Baker sent an email to the Brocks saying the LHIN will soon issue a request for proposals from private providers for residential “cluster-care” for young adults such as David with complex medical needs.

Baker says her staff has been “working very hard on this for two years,” adding she hopes the facilities can be set up by late 2012.

Hopefully, she’s right, because time is running short for Joanne and John Brock.

More on thestar.com

We value respectful and thoughtful discussion. Readers are encouraged to flag comments that fail to meet the standards outlined in our
Community Code of Conduct.
For further information, including our legal guidelines, please see our full website
Terms and Conditions.